U.S. Hereditary Angioedema Association


U.S. Hereditary Angioedema Association

US Hereditary Angioedema Association, Inc. (US HAEA). Founded and staffed by HAE patients and HAE patient caregivers. HAEA's mission focuses on increasing HAE awareness and education, obtaining an accurate diagnosis, empowering patient access to therapy, and fostering groundbreaking research that includes finding a cure.

Organization Type:
National Trade or Professional Association
Acronym:
HAEA
Tax Exempt Status:
501(c)(3)
Industry:
Medicine/Health Care/Mental Health, Health Care
Year Founded:
1999
Address:
10560 Main St.
Suite PS40 Fairfax, VA 22030
Telephone:
Toll Free:
Fax:
Website:
Staff:
21
Volunteers:
800


Financial Snapshot

 

Total revenues: $4,155,823


Year - 2017
1st-yr growth
8.50%
 
 
 
 
 
Year by Year
Revenue
 
Total contributions
 
Investment income

Total expenses: $5,282,125


Year - 2017
1st-yr growth
-0.17%
 
 
 
 
 
Year by Year
Expenses
 
Other expenses
 
Compensation for non-officers/directors
 
Grants to governments/orgs in the US
 
Other

Total assets: $4,715,448


Year - 2017
1st-yr growth
-28.57%
 
 
 
 
 
Year by Year
Assets
 
Savings and temporary cash investments
 
Accounts receivable
 
Prepaid expenses or deferred charges
 
Other

Total Liabilities: $1,779,738


Year - 2017
1st-yr growth
-12.40%
 
 
 
 
 
Year by Year
Liabilities
 
Other liabilities
 
Accounts payable and accrued expenses

   Revenue:

Revenue: Amount ($)
Total contributions 4,127,702
Investment income 28,121
Royalties 0
Sales of non-inventory assets 0
Net rental income 0
Miscellaneous revenue 0
Gaming income 0
Tax-exempt bond proceeds 0
Fundraising income 0
Income from sales of inventory 0
Program service revenue 0
Total Revenue:

$4,155,823

1-yr growth
8.50%
Total contributions
Investment income

   Expenses:

Expenses: Amount ($)
Other expenses 1,690,186
Compensation for non-officers/directors 1,423,803
Grants to governments/orgs in the US 1,146,436
Compensation of current officers, directors, etc 248,859
Travel 198,641
Advertising and promotion 139,822
Payroll taxes 127,370
Other fees 101,321
Other employee benefits 100,623
Information technology 42,320
Office expenses 31,456
Occupancy 11,120
Conferences, conventions, meetings 8,742
Insurance 7,989
Legal fees 2,765
Depreciation, depletion, amortization 672
Interest expense 0
Payments to affiliates 0
Accounting fees 0
Lobbying fees 0
Professional fundraising fees 0
Investment management fees 0
Management fees 0
Pension plan contributions 0
Royalties 0
Travel/entertainment expenses to public officials 0
Compensation of disqualified persons 0
Grants to individuals in the US 0
Grants to orgs and individuals outside the US 0
Benefits paid to or for members 0
Total Expenses:

$5,282,125

1-yr growth
-0.17%
Other expenses
Compensation for non-officers/directors
Grants to governments/orgs in the US
Compensation of current officers, directors, etc
Travel
Advertising and promotion
Payroll taxes
Other fees
Other employee benefits
Information technology
Others

   Assets:

Assets: Amount ($)
Savings and temporary cash investments 4,711,792
Accounts receivable 2,050
Prepaid expenses or deferred charges 1,000
Land, buildings, & equipment (net) 606
Cash -- non-interest bearing 0
Inventories for sale or use 0
Investments in other securities 0
Receivables from officers, directors, etc. 0
Receivables from disqualified persons 0
Notes and loans receivables 0
Program-related investments 0
Intangible assets 0
Investments in publicly traded securities 0
Other assets 0
Pledges and grants receivable 0
Total Assets:

$4,715,448

1-yr growth
-28.57%
Savings and temporary cash investments
Accounts receivable
Prepaid expenses or deferred charges
Land, buildings, & equipment (net)

   Liabilities:

Liabilities: Amount ($)
Other liabilities 1,680,981
Accounts payable and accrued expenses 98,757
Deferred revenue 0
Tax-exempt bond liabilities 0
Escrow or custodial account liability 0
Loans and other payables to officers, directors, etc. 0
Secured mortgages and notes payabl 0
Unsecured mortgages and notes payable 0
Grants payable 0
Total Liabilities:

$1,779,738

1-yr growth
-12.40%
Other liabilities
Accounts payable and accrued expenses

   Net Assets:

Net Assets: Amount ($)
Unrestricted net assets 2,591,032
Temporarily restricted net assets 344,678
Permanently restricted net assets 0
Total Net Assets:

$2,935,710

1-yr growth
-38.37%
Unrestricted net assets
Temporarily restricted net assets

Key Staff

  
Name Ascending
Title 
Function 
Add Prospect 
Anna Chenoweth Patient Advocate Legal ...X
Anthony Castaldo President and Chief Executive Officer Board Member, Chief Executive Officer, Executive Director ...X
Christine Selva Executive Project Manager Administration, Senior Executive ...X
Ianice Viel Manager, Social Media, Digital Platforms and Engagement Communications/Public Relations, Computer/Information Technology ...X
Janet Long Director, Research Research, Senior Executive ...X
John Williamson Patient Advocate Advocacy and Clinical Trials Consumer Affairs, Government Relations, Legal, Research ...X
Joyce Wilmot Manager, Information Technology and Web Developer Communications/Public Relations, Computer/Information Technology ...X
Larry Salus Director, Finance Finance ...X
Leigh Farrar Director, Operations Operations ...X
Lois Perry Director, Health Director of Government Relations, Government Relations, Senior Executive ...X
Michele Agostinho Bookkeeper Finance, Operations ...X
Michelle Cuevas Managing Director Consumer Affairs, Senior Executive ...X
Nicole Jewell Patient Advocacy and Engagement Administrative Support Administration, Government Relations, Legal ...X
Sally Urbaniak Health Advocate Consumer Affairs, Legal ...X
Sherry Swanson Patient Advocate Consumer Affairs, Legal ...X
Troyce Venturella Health Advocate Legal ...X

Meetings/Conferences

Year Descending
Name 
Location 
Facility 
From 
To 
Attendance 
Exhibitors 
Facility Amenities 
20152015 National Patient Summit - 15th Anniversary of HAEA Denver , CO , United States Denver Marriott Tech Center October 9 October 11    ...X

Publications

Name 
Frequency 
Advertising 
HAEA NewsletteronlineNo...X

Recent Lobbying Spending

Source: Lobbying Disclosure Electronic Filings, Office of the Clerk, U.S House of Representatives.

2018 Q4: $10,000
2018 Q3: $10,000
2018 Q2: $10,000
2018 Q1: $10,000
2017: $10,000


PAC Details

Name: -



FEC ID: -



Last updated: -


PAC Contributions

(-)

Outside Representation

Firm Name Ascending
Reg/ Term 
Date 
Health and Medicine Counsel of WashingtonRegistration 08/01/2010 ...X

Legislative Issue Focus

Source: Lobbying Disclosure Electronic Filings, Office of the Clerk, U.S House of Representatives.

Active Legislation

This organization has no active legislation data available.

Contractors

Contractor Ascending
Service Category 
Reported Year Descending
Reported Compensation 
Health and Medicine Counsel of Washington Lobbying/Advocacy/Legal2019 $20,000 ...X
Health and Medicine Counsel of Washington Lobbying/Advocacy/Legal2018 $40,000 ...X
Health and Medicine Counsel of Washington Lobbying/Advocacy/Legal2017 $40,000 ...X
GLOBAL PATIENT STRATEGIES LLC SCIENTIFIC REGISTE2016 $137,600 ...X
Health and Medicine Counsel of Washington Lobbying/Advocacy/Legal2016 $40,000 ...X
KING BIOLOGISTICS BUSINESS DEVELOPME2016 $132,600 ...X
GLOBAL PATIENT STRATEGIES LLC SCIENTIFIC REGISTE2015 $105,000 ...X
Health and Medicine Counsel of Washington Lobbying/Advocacy/Legal2015 $20,000 ...X
KING BIOLOGISTICS BUSINESS DEVELOPME2015 $117,600 ...X
Health and Medicine Counsel of Washington Lobbying/Advocacy/Legal2014 - ...X
Health and Medicine Counsel of Washington Lobbying/Advocacy/Legal2013 - ...X
Health and Medicine Counsel of Washington Lobbying/Advocacy/Legal2012 - ...X
Health and Medicine Counsel of Washington Lobbying/Advocacy/Legal2011 - ...X
Health and Medicine Counsel of Washington Lobbying/Advocacy/Legal2010 - ...X

***Disclaimer: This information has been sourced from a combination of the IRS Forms 990, 5500, and the Federal Audit Clearinghouse



 
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